I've been sick for 5 years and recently went to a "Lyme Disease Specialist".

He works out of a building complex next to a fast food restaurant and staffs only three people.

He did the Western Blot on me and also the Urine test for Lyme.
Urine test was negative, Western Blot was positive.. by his standards.

I have only had maybe 4 tickbites in my life, never had a bullseye rash, and they were all when I was a child, nearly 15 years ago.

I have some of the symptoms of Lyme Disease, but well... who doesn't, the list fits just about everyone and every condition on earth.

By CDC standards the western blot was negative, but I understand there is some controversy over that.

Since receiving the test results, I have tried 5 different antibiotics (oral) as prescribed by the doctor.
They have not helped at all.

The doctor has around 5 more lined up and then, if those don't help, he wants me to start over at the beginning and try Intravenous.

Now I am no fan of having a catheter(sp) in my arm for the next few months, but that is beside the point really.

I am trying to figure out if I should continue trying all of these things which will probably take up another year of my life if it is probably to no avail and cost godly amounts of money, when I could be visiting another doctor and getting diagnosed with another problem if I have it.

Every doctor I have talked to around where I live says that the Western Blot was negative and I do not have lyme disease, except for this doctor, but as I said before, I understand there is some controversy about it, and he IS a designated "Lyme Specialist", at least by his own standards.

Here is my western blot results.

If you have knowledge about it, could you please lend me some advice as to if you think this is a credible and POSITIVE western blot test, and if you think it is worth my trouble to continue with this whole new course of antibiotics when the current ones have done no good... not to mention a few "test' antibiotics that are not FDA approved (/shivers at the thought).

LYME IgM WESTERN BLOT
(My doctors standards for testing
The IgM WB is considered positive for the presence of AB to B. Burgdorferi if two of the starrded bands are present: 23-25, 31, 34, 39, 41 kDa.
.
The IgM WB is considered equivocal if one of the starred bands is present.
.
(CDC standards for testing
An IgM WB is positive if two of these bands are present: 23-25, 39, 41 kDa. New York State Deparment of Health considers WB positive that conform to the ASTPHLD/CDC criteria.

LYME IgG WESTERN BLOT
(My doctors standards for testing
The IgG WB is considered positive if two of the starred bands are present: 23-25, 31, 34, 39, 41, 93 kDa.
.
The IgG WB is considered equivocal if one of these bands are present: 23-25, 31, 34, 39, 93 kDa.
.
41 kDa, by itself, is negative.
.
(CDC standards for testing
An IgG WB is positive if five of these bands are present: 18, 23-25, 28, 30, 39, 41, 45, 58, 66, 93kDa. New York State Department of Health considers WB positive that conform to the ASTPHLD/CDC criteria.

**34 kDa +/-
**41 kDa ++
**58 kDa +
66 kDa +/-

NEGATIVE by CDC standards, Positive by Doctor's standards.

---------------------------------------------------------------------

What i'm wondering is this - Is it possible that I can have those bands show up and still NOT have or had Lyme Disease in the past?
I understand the test looks for antibodies to certain proteins of bacteria.
Could my body be producing antibodies to those bacteria in response to some other illness other than Lyme disease?
What % chance do you think there still would be that I have Lyme Disease after looking at my test results and the fact that I will have tried 10 different antibiotics to cure it?

If anyone knows where I could find this information or offer some of your own advice if you are knowledgable on this subject, please do.

Thanks for your time.

Last edited by Johnpr; 12-31-2003 at 01:22 PM.

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12-31-2003, 06:54 PM

#2

ticker

Senior Veteran

(female)

Join Date: Jan 2002

Posts: 5,787

Re: Western blot, What do you think?

Hi Johnpr. Are you having symptoms? First of all, are you sure your doctor is knowledgeable about Lyme? Why would he prescribe antibiotics that are not approved by the FDA? This would make me very suspicious. Where do you live?

Although a bullseye rash is a definite sign of Lyme Disease, only about 50% of people who have Lyme ever get a rash. Often, people are bitten by ticks without them knowing it because they are very small and inject a numbing agent so you cannot feel them on you. Even if the last time you were bitten was 15 years ago, it is still possible you have Lyme. It can lie dormant for a long period of time.

No Lyme test is completely reliable. Even the CDC (who is behind the times regarding Lyme Disease) states that a negative test does not rule out Lyme. There is an over reliance on tests when it is supposed to be a clinical diagnosis.

How long have you stayed on each antibiotic? It can take quite some time to tell if an antibiotic is working. Have you been tested for the co-infections that ticks can transmit--Babesiosis, Ehrlicihiosis HME & HGE, and Bartonella? Many people who have Lyme are co-infected and it will affect treatment choice and progress. Many doctors believe the co-infections need to be treated before Lyme treatment is effective.

The IgM Western Blot tests for a more recent infection and the IgG tests for a longer-standing infection. It is rare to have the number of bands required by the CDC for the test to be positive. Some bands are specific for Lyme. Here are the meanings of the bands you have:

~~Band 34 is specific for Bb (Lyme bacteria)
~~Band 41 is usually the first to show after a Bb infection
~~Band 58 is unknown but may be a heat-shock Bb protein
~~Band 66 is cross-reactive for all Borrelia, common in all bacteria

Do you know which lab did your test? Some labs are better than others.

I am interested in your responses regarding the number of antibiotics you have taken and for how long, and whether or not you have been tested for the co-infections. From what I understand of band results, I think you have Lyme. I would recommend getting another opinion, especially if this doctor is considering giving you unapproved medications.

01-02-2004, 07:42 AM

#3

DTemple

Senior Member

Join Date: Sep 2003

Location: Amston, CT USA

Posts: 263

Re: Western blot, What do you think?

John and Ticker,

I have just had my second Western Blot and my third Elisa test. All of my lyme tests are considered negative so far. This latest test only shows band 41 as reactive on the IgG, however the language in a notation from the laboratory states that a negative Western blot interpretation does not exclude the possibility of infection with B. burgdorferi. Clinically, I definitely have lyme disease and although it was caught and treated very early on - in September 2003, I am still having symptoms and now taking my third course of doxycycline. Don't give up, go with your instincts, be persistent and perhaps get a second opinion. I have seen three doctors and will be seeing a fourth doctor at the end of January.

01-05-2004, 02:36 PM

#4

bsimons14

Junior Member

(male)

Join Date: Aug 2003

Location: Philadelphia, PA United States

Posts: 33

Re: Western blot, What do you think?

John:

I'm in a similiar type of situation as you. I was diagnosed with Lyme in 98 and treated just for a few weeks. I had about 18-20 symptoms that I really didn't quite understand. In September I took the Western Blot and the results were also positive. At times I wonder if the whole thing is a scam, if they tell everyone that their results were positive just to make a buck. My doctors office is also sorta shady and you can't help but to question whether or not it's legit especially considering the controversy that circles the disease and the diagnosis.

But I do feel better now than I did before especially following my weekly Rocephin shot. For some reason the other antibiotics really don't do jack for me in terms of feeling better.Apparently all they do is prevent the present bacteria in your system from reproducing. All I can say is ask your doctor for some rocephin and try to increase the dosage. According to my doctor it's common for an individual who's had Lyme for a long period of time to respond well to the rocephin. Also, when you've had Lyme as long as we have treatment generally takes a while. I wouldn't be to surprised if my treatment carries into the summer or even the fall.

I'd say I feel good about 60% of the time compared to feeling terrible all the time in the past. I don't know much about your doctor but I'm going to have faith in mine. No other doctors did a damn thing for me and I'd rather feel a little better like I do now and continue to improve than be poor and feel like crap all the time and have money.

01-08-2004, 08:38 PM

#5

garand70

Newbie

Join Date: Jan 2004

Posts: 1

Re: Western blot, What do you think?

Johnpr,

Some things to consider...

The ELISA test is only about 40% accurate. That means that 60% of positive cases are reported as negative.

The Western Blot test, while better, reported as 65 to 80% accurate, still allows for 20 to 35% of positives cases to be reported as negative.

The band considered to be the most specific for the Lyme borrelia is band 31 kDa. It is so specific that it is the one that was used to develop the vaccine that was developed for Lyme borreliosis. The next most specific is reported to be band 34 kDa.

Being the first of the borreliosis family (strain) of illnesses to be studied, in the eighties, the current Western Blot test was developed for that strain. There has been shown conclusively that there is at least one other strain of borrelia that causes the same type of symptoms. Yet, I am not aware of any further study that other bands may be more specific to the other strain(s). Then, too, antibodies have a habit of not developing or are lost very quickly. Science is in the infancy stage of knowledge on this subject matter.

There is a relative new test, called the Bowen, that actually looks for the antigen, the borrelia bacteria. With overnight shipping of the speciman, it is reported to be 95% accurate, and, even higher if the sample is studied immediately upon withdrawal from the patient. True the test has not been accepted by the FDA because of the high percentage of POSITIVES found. However, if one does not have symptoms and feels punk, or worse, why would anyone want to spend the goodly amount of money on the test. Conversely, why would one want to risk one's reputation/license on promoting a false test. No one believed Louis Pasteur at first either.
Bill

11-16-2004, 07:55 AM

#6

Klatu

Newbie

Join Date: Nov 2004

Location: Auburn WA

Posts: 1

Re: Western blot, What do you think?

I've been sick with Cfids/ Lyme symptoms for 18 years. A year before I became ill I vacationed with my father at Martha's Vineyard. This is a hot bed for Lyme in the U.S.. I didn't suspect Lyme Disease during the first years of my illness as I was not "bed ridden". I had read on Medline tht most patients are Bed ridden. So I missed the boat when it comes to early detection and treatment. I recently recieved a positive clinical diagnoses for Lyme froma very nice Doctor here in Washington State. After 6 months of treatment she unfortunatly had her license to practise medicine revoked. This was unfortunate for me as I was making progress but more unfortunate for her. Lyme Specialists are under constant harrasment and often come under fire for bucking the "standerd" protocal. It is sad that more people don't return this same compassion. They seem like most health care professionals to opperate out of a general concern for others. Putting their patients first.

The reason I posted was to ask for some general advice regarding my Lyme test results. The group here seems well informed on Medical matters. My test results, ordered for me by an M.D. at the U.W. showed that I was positive under the Elisa test. Also positive for 23 kDa on the Western Blot IgM IFA. From what I understand the 23 kDa is specific for Lyme. Under the old standerds conclusive of Lyme infection. Correct ? The Doctor later ordered a P.C.R that came back negetive. I understand their can be many reasons for that. My first blood draw for the P.C.R. had to be redrawn. Perhaps the second spoiled as well. Now I'm to the point of pursueing Abx treatment. I understand that this is the preffered way to go. I'm also taking herbal supplements such as Samento Drops, Goldenseal and Echinicea. The funny thing is the U.W. Doctor said that I probably did not have the condition and would not order Abx. My G.P. has not as well. My next srep is to see an M.D. whos has recently begun treating Cfids. Using the Teitlebaum protocal.

My qusetion is, should I seek treatment for Cfids as in the past or ask my new Doctor to treat me for Lyme disease. I may have both conditions co-occuring. Previous to my illness I worked in Contruction in a long buried Seattle landfill. A very smelly propasition. For 25 years of my life I have lived, worked and gone to school near Bellingham's Georgia Pacifics Pulp and Paper Mill. I believe that these two exposures somehow weakened my immune system or caused nervous system damage leading to the later infection. I was previously a very robust individual. As a result of my illness I have worked only 4 and half years out of the past 17.

To the person who first posted. If it's not broken don't fix it. If your haveing serious symptoms then pursue treatment. If treated early Lyme disease can e cured. For my late stage condition prognosis is uncertain. My Arthritis worsens month by month. I had planned a career as an actor and dancer among other things. I think thast the 23 kDa is proof enough. Perhaps proof positive. Now finding a Docor who can treat me is another topic. Your Doctor deserves your thanks for trying to help.

Klatu/Northwest

Last edited by moderator2; 11-16-2004 at 08:01 AM.
Reason: Please carefully review the posting rules - no emails. It is allowed to post the name, city and state of a doctor. Thank you for your understanding and cooperation.

11-16-2004, 08:21 AM

#7

dealer1111

Senior Veteran

(male)

Join Date: Nov 2004

Location: Phil. PA

Posts: 615

Re: Western blot, What do you think?

Can't believe what I am hearing day in and day out, we need to band together and get action!!!

I have connected and sent many emails and letters out to TV and News shows, and I will not stop until we all get some answers on a national basis.

Everyone start emailing and sending your stories to all in News and Day time talk shows, if we all cry loud enough someone will have to hear our plight...

I am willing to do all that is needed to get some kind of awareness movement going, maybe for some it is to late, but for many, they need our help as a group before it maybe to late for others.

Marks story touched me so deep can't even let you know how I feel and I have no words to make others understand alone, but as a group we can make some noise!

Last edited by dealer1111; 11-16-2004 at 08:24 AM.

11-16-2004, 08:33 AM

#8

ncgirl88

Senior Veteran

(female)

Join Date: Aug 2004

Posts: 1,456

Re: Western blot, What do you think?

ekim1111 -

I am with you!

ncgirl88

11-16-2004, 11:03 AM

#9

ticker

Senior Veteran

(female)

Join Date: Jan 2002

Posts: 5,787

Re: Western blot, What do you think?

Hi Klatu, welcome to the board I am very sorry you have been sick for so long , I know it is frustrating. I am also sorry to hear about your doctor.

Many people who have Lyme were first diagnosed with other diseases, including Chronic Fatigue. Yes, Martha's Vineyard is a hot bed for Lyme and I believe also for the co-infection Babesiosis. No Lyme test is completely reliable. A knoweldgeable doctor will not rely solely on test resutls when considering treatment. Yes, band 23-25 on the Western Blot is specific for Lyme. Test results can vary by lab. It is important to be tested by a Lyme reputable lab such as IngeneX in Palo Alto, CA. Do you know which lab was used for your testing?

Besides Lyme disease, ticks can also transmit several co-infections--Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, so it is very important to be tested for these by a Lyme reputable lab.

Yes, I think you need to pursue a Lyme diagnosis. It is very important to see a Lyme knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. I do not know of any Lyme doctors in WA. The closest I know of to you would be in northern, CA. If you would like any of their names let me know. Do an on-line search for "Washington state Lyme disease support groups." You should be able to find some contacts who might be able to recommend a doctor in your area.